A Seismic Shift

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Along with many other people, I am a person who is always trying to make myself better. I don’t want to stagnate in my relationships, my learning, my life. I would consider myself a life-long learner, a phrase I first heard my uncle use approximately three decades ago.

Since I graduated from college, I have almost always been in one kind of class or training program. I graduated from college with a BA in Liberal Arts in 1989 and since that time I have taken diversity training, non-profit organization training, numerous writing classes, a year-long leadership training program, a culinary arts program, etc.

Occasionally throughout the years, there has been a teacher, a statement, an exercise that has changed the course of my life. I can name these people, quotes, and experiences on two hands. Last night I had one of those experiences in a class I am taking online from Lidia Yuknavitch.

When I received my first diagnosis of bipolar disorder in my twenties, I spent a lot of time romanticizing the illness. I thought maybe having bipolar disorder made me more creative or more intelligent, or unique in other ways. I spent many days reading about famous people with the disorder.

At nearly forty, when I received a diagnosis of schizophrenia, I didn’t romanticize the illness at all. Schizophrenia, unlike bipolar disorder, is rarely romanticized in writing, or in the media. I adapted an attitude that many people have about mental illness in general which is that people who are creative would be creative with or without the illness and it is possible that if they weren’t sick, they would be far more productive. I adapted this attitude because it was far better than the messages society gave about schizophrenia.

I internalized some of those societal messages, too. In other words, I could find a silver lining in being someone with bipolar disorder, but I only saw hardship and struggle in the diagnosis of schizophrenia.

Last night, for the first time since my diagnosis over a decade ago, this attitude shifted a little bit. Some of my internalized stigmas shook loose, and I looked at schizophrenia a bit differently than I ever have in the past.

Just to let you know, Lidia Yuknavitch is a bestselling author. She is magnetic in her beliefs and has an amazing spirit of creativity, and wildness. She is generous and kind, and she wrote the book, “The Misfit’s Manifesto.” (I recommend that anyone with a mental illness read this book to find acceptance and a way forward despite what society tells you.)

So, what did Lidia say to me last night that shifted my perspective? I can’t quote her exactly, but she said that I have characters, voices, and things to write because of schizophrenia that no one else can write and that there is deep creativity in that.

I don’t like that I once romanticized bipolar disorder. And I don’t want to romanticize any mental illness, but when you live with a diagnosis that so many people consider the “worst” thing that can happen to you and someone you respect says that that illness gave you a gift in a way you care deeply about, you take it.

You take it, you look at it, you circle it, you inspect it, and you write as you have never written before because gosh darn no one has ever said anything positive about schizophrenia, and you heard it. You heard it from her.

The Positive Mental Health Boost of Having a Routine

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I found something that is life-changing for me. What is it? Routine. I imagine the concept of a routine sounds simplistic to some of you, and obvious to others, but I never knew what kind of difference it could make to my mental health.

I am not talking about a routine that is designed from the time I wake up to the time I go to bed, my routine is way more flexible than that, but it does pop up in and out of my day.

In the morning, if I am the last one to get out of bed, I make the bed. I know that sounds simple, but it helps me feel like I have tidied up a little bit and accomplished something before I even leave the bedroom. I also take care of my teeth not long after waking up, then make coffee, eat a banana and take my medications.

While I am having my first cup of coffee, I work through my day planner (set up to help with productivity). And I work one exercise in a book of lists that I write that are supposed to increase happiness. I also work in another book that is supposed to increase creativity, and then I write a paragraph or two from a writing prompt out of a huge writing prompt book I have.  All of these exercises, take about a half of an hour, and that completes my morning routine.

Later in the day, I try to take two 15 minute walks in between writing, watching the news, reading or whatever else I am doing.

I have dinner around six o’clock every night and take my second dose of medication.

Before bed, I fill up my water jugs for the next day and put them in the refrigerator so they will be cold. I also clean out the coffee pot and floss and brush my teeth.

There is a lot of room during the day to do whatever else I want, need, or feel like doing, or handling a nap or panic attack or any symptoms that come up.

I have found since I have started this routine that I am far more productive (writing at least one essay, homework assignment, or blog post a day). I also get out and take walks more frequently (from 2-4 times a day), and I work on two projects (books) that I am working on with my writing buddy.

I just can’t stress how much happier I am now that I stick to a routine and I get so much more done during the day. Not every day runs perfectly because of symptoms of schizophrenia or one of my other health issues (back and stomach), but about 90% of the time I feel good about my day, my progress, and how I spent my time.

I never knew how much better I would feel with a little bit of work and structure. I’m all for the familiarity and boundaries of a routine!

 

 

What If Other People Could Hear the Voices Talking?

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MIT created a device that gives voice to the voice inside your head.  From my understanding, the device doesn’t read your mind, the user speaks silently to themselves, and the device recognizes the words.

I was thinking about the further development of this technology and how it might help doctors to better understand schizophrenia by allowing them to “hear” the voices that so many of us who have the illness either hear or have heard.

Imagine if a psychiatrist could “listen” in while a patient is having a conversation with God, Jesus, or any other number of deities, spirits, or hallucinations I have heard people with schizophrenia describe.

Would it be possible for the doctors to help us “control” the voices we hear? Would it be possible for them to begin to understand why we hear let’s say the voice of Jesus because that is a common experience among people who hear voices? What could they learn from the conversations we have with our voices?

I know the technology may never be used in this way because it doesn’t read the mind. I wish it could though because I would love to have other people hear what it is like to have conversations with God, Jesus, the Holy Spirit. Also, I would love to have documentation of some of the previous discussions I have had, because many of them seemed like there was no way I could make them up or even know some of the information the voices and I were discussing. A mind is a fascinating place, and schizophrenia is just one of its mysteries.

I hope they’ll make progress in this area, and that the progress benefits voice hearers. I for one, would find this exciting, fascinating, and potentially useful for treatment on many levels.

 

What is Advocacy?

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Almost everyone I have come into contact with that has access to the internet and has a mental illness (with current research, I am not sure how much longer that label will be around) calls themselves an advocate. I frequently call myself an advocate as well but will do so less and less.

Calling yourself an advocate makes it appear to people, not that you have the experience of one person, but that you are an expert or authority on one of those illnesses. Most of the advocates that I have met don’t even bother to keep up with laws, trends, research, etc. that have to do with the illness where they are viewed or seen as an expert or authority.

I will give you an example of advocacy that I think harms the larger community of people living with a brain illness. The disability community has long preferred people first language to refer to people with an illness so, a person would say, I have diabetes, not, I am diabetic, or I have cancer, not I am cancer, or I have schizophrenia, not, I am schizophrenic. Using this word may seem like a small issue to someone who is an “advocate,” and they may decide they don’t care about that issue at all and scream from every platform they can find, “I am schizophrenic! I am schizophrenic! I am schizophrenic!”

It is great that they don’t think this is a big deal. But view it like vaccinations. Many of us don’t get vaccinations to prevent ourselves from getting an illness we get vaccinations to prevent giving the illness to someone who is far more vulnerable than us. It is the cost, the dues, the responsibility of living in a community. We take care of the most vulnerable among us.

I will say that for many people being called a schizophrenic is harmful. People who call other people that are making that the key source of their identity, not allowing them to first be, writer, teacher, fireman, lawyer, wife, husband, son, father, mother, sister, brother, etc. We all have so many identities that we would prefer to be known for rather than the one that is seen as broken, or ill.

I think it is a matter of privilege that people can say the word schizophrenic doesn’t bother them. It means that being dehumanized and identified as an illness has no bearing on their lives and their happiness and their success. I challenge the people who think this way. I think “advocates” who think this way are unwilling to admit that there is a huge divide in the mental health community.

There are those with the privilege of having clear enough thoughts and the means to write on the internet every day, and there are those, living in the streets, in prison, those at risk of being shot by police, and those without access to treatment. Those people can’t afford to be demeaned anymore than they already are. Seeing them as a brother, mother, father, sister, is critical to their survival and seeing them as someone who is schizophrenic is harmful because let’s face it, people still believe people with schizophrenia are less than, not quite human, and in some cases capable of monstrosities.

In my world, until all the mentally ill are cared for, and treated with dignity, then none of us are free to claim that some issues that demean others are of no harm. It is our responsibility to stand up, and if we are going to call ourselves advocates, let’s get to it – people are dying.

Does it Scare You When I am Just Like You?

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Undeniably, there are times when I need special accommodations for my illness. There are times when I need people to be aware of the fact that I have schizophrenia and either help me out or give me the space to try and help myself. But there are those glorious times when I am not fragile, I am fierce and tough, and intelligent, and funny and I don’t need any special attention or care.

It is the space where I don’t need anything more than to be treated like any other human being that I live for and love. It is those people who treat me as if I belong, as if I’m not different, as if I won’t break or fall apart, or as if I am not fragile or needy or imperfect who makes me feel the healthiest, the happiest, the most energized, strong and capable. They help me in my healing and help me to become more and more of myself.

I have several people in my life who treat me this way both friends and family. I had an experience with a relatively new friend though, that was the epitome of empowering and normalizing and badassery.

I have a writing buddy who I have been talking to on Skype every Wednesday for months. We talk about our writing, share resources, occasionally read each other’s work, take classes together, and basically bolster each other up and along with our writing goals. She wanted to come out to California and see me. My husband was going to Miami to see his mother for a week, and he never leaves me alone.

My writing buddy, knowing about the fact that I have schizophrenia and that my husband doesn’t want to leave me alone for a week, offered to come and stay with me. She has never been to my house. We have never met in person. She planned on staying ten (which could have been long) days. And, the biggest part of this is my having schizophrenia didn’t scare her. Her coming across the country to stay with an almost stranger who she knows has schizophrenia is gutsy, brave, and speaks volumes about her as a person.

She obviously houses no stereotypes about my illness. She obviously expected things to go and be okay. She was not afraid; she was not reluctant. She just did it, and it was productive and fun. We were creative, talkative, ate good food, walked in the park, saw museums, and shared writing, writing, writing. We developed a morning routine together and worked well while we were both in the same room. We were two women together who love our art and are friends. We shared our passion, and we established our relationship.

I got to put my identities writer and friend before my identity as someone with schizophrenia. I got to be normal for ten days. I got to be a creative woman who loves words and can be a good friend.

I got to show someone my neighborhood, my home, myself and it went well, and I was well. And that is so much, so very much, it is a piece and a part of everything.

 

 

 

 

 

 

Telling the Stories, Kicking the Stigma

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I assume from what I have read, heard, and watched in movies and on television, that most people when they hear the word schizophrenia, they think of a scary kind of madness – asylums, voices, violence, loners, and a whole lot of creepiness.

The image I would like to blast out to the world is the image of some of the people I have encountered with schizophrenia. There is Bethany who is writing and working on research to better the understanding of schizophrenia. There is Allie who works full time, goes to school, writes, and runs a nonprofit to fight the stigma against mental illness. There is Kevin who is an artist and working on a movie about schizophrenia and other projects. There is Michelle, who is an entrepreneur and has her own business trying to raise awareness of schizophrenia, and there is Esme, an award-winning writer, and of course, there is Elyn Saks.

Elyn Saks is the person most people hold up as a successful example of someone living a fulfilling life with schizophrenia. Many people who are not as famous as Elyn, but who have schizophrenia are living lives with jobs, relationships, paying the bills, running business meetings, going to class, speaking, writing, driving, grocery shopping, etc.

I would like to change what people think of when they hear the word schizophrenia. Instead of asylums, creepiness, loners, etc. I would like people to imagine an everyday person with challenges that might be a little different than the next person’s but with the same hopes, dreams, and desires.

Many people talk about the appropriation of identity and culture. In simple terms, that means, profiting off of someone else’s culture, story, etc. I used to get angry and frustrated when I would see, or read about people without schizophrenia telling or sharing the story of someone with schizophrenia. I felt as if people with schizophrenia are creative and capable of telling our stories without others doing it for us. I no longer feel that way, though.

I would like to see more movies and books with characters who have schizophrenia, but I would like to see those characters normalized instead of stereotyped or sensationalized. I think that is the way the number one way to kick stigma by making schizophrenia commonplace and showing our similarities to others rather than our differences.

 

 

Is it Your Personality or is it Schizophrenia?

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When I was a teenager, and I would go to visit my dad (my parents are divorced), I would frequently get impatient with him because he talked to people wherever we went. If we went to the grocery store, he would talk to the woman next to him about rice, and as we were checking out, he would talk to the cashier about the weather, the specials that day and anything else that crossed his mind.

Recently, my in-laws come over from France, and commented to my husband, that it makes them uncomfortable that I talk to strangers at the train station, grocery store, in restaurants and on the street.

So often people claim that they have become their mothers, but in this case, with my relative’s observation, it occurred to me that I have become increasingly like my dad.

I mentioned earlier in the week that my writing buddy is visiting for a week from Virginia, while my husband is out of town. The two of us went to a hotel to celebrate Easter at a brunch buffet. I made the reservation for eleven, but by ten in the morning we were both hungry and wished we could dig into some of that food.

I called the hotel, but they said they were booked and couldn’t’ get us in early. We decided to head to the hotel, hang out in the lobby and possibly walk around the block. We agreed that something about being near all that food made us feel better than waiting at home.

When we arrived at the hotel, we climbed the curved staircase with wood railings to the second floor where the brunch was set up. There was a man at the top of the stairs assisting guests. I told him that we had reservations at eleven but that we had come early. He said, “Well, you need to check in on the first floor, and it is possible they can seat you now. I’ll take you down to the desk.”

We followed him back downstairs, and he asked my last name. I spelled it for him and then said it. He went to the desk in front of us and told the woman and man sitting there my name and that I had reservations at eleven and could they possibly seat us earlier. The man behind the desk said, “Unfortunately, we are booked.” I said, “No problem at all, we will take a seat in the lobby and wait until our table opens up.”

Before we could walk away from the desk, the man who had met us at the top of the stairs said, “I’ll take you to your table.” I said, “Wow, you know how to pull some strings!” He laughed, and the two of us talked the whole way up the stairs until he handed us off to the hostess.

Later, while I was getting food from the buffet line, I saw the man who got us our table, and he asked me how I liked the food. I said, “It is so beautiful, and it is delicious. The perfect way to celebrate Easter.”

While Joyce and I were eating, the same man came to our table, and I told him I was standing up (instead of seated at our table) because my back hurts when I sit. He told me all about his back injury and asked if I wanted to walk around the buffet and loosen my back up. He said if I did, he would sit down and keep Joyce company. We all laughed really hard.

I talked to about a half-dozen other people while we were enjoying our buffet, and I know it isn’t much, but it made my day brighter. I love talking and interacting with strangers. It is a shame that my schizophrenia keeps me isolated so much of the time because what once made me impatient about my dad, brings me great joy.

Becoming our parents isn’t always as scary as it sounds.

 

 

 

 

 

When Schizophrenia is not Your Only Challenge

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My writing partner, Joyce, is here from Virginia. We are creating a week-long writing retreat at my house. Last night, my husband, who loves to show people around our city, wanted to take Joyce out to Old Town. Old Town is the area where the Spanish first settled here. It is considered the “birthplace” of California. In Old Town there are dozens of Mexican restaurants, so we planned to go to one of the largest.

Joyce had never heard of or tried, potato tacos, and I happen to love potato tacos, so I told her all the wonders of them while we were driving in the car to the restaurant. When we arrived the line for seating was long, but we talked with each other and other people waiting in line, so the time went quickly.

Once we were seated and looked at the menu, Joyce decided to order the three taco plate, and she asked me if I wanted one of the potato tacos. I was going to order a side of refried beans and a taco, so Joyce’s suggestion was perfect.

The service was rather slow because the restaurant was packed (Spring break in Southern California), but when our food arrived Joyce offered me a taco off of her plate. There were tomatoes, and many other things mixed in with the potato that I can’t eat due to my diverticulitis. At first I tried scrapping the toppings off and away from the potatoes but there were too mixed up, so finally, I apologized and said, “I’ll have my beans. I’m sorry. I can’t eat that.”

In the past year, with health issues (diverticulitis and my back) I have had to say no, or no thank you, or sorry, I’ll have to pass, on more occasions than I can count. At first, I felt a lot of disappointment at not being able to indulge in things that I normally enjoy or consider my favorites. Now, I am so used to having to say no, that the disappointment doesn’t hit me very hard. Trust me, I wanted that potato taco, but for health reasons, it was a better choice not to take a risk and eat it.

I am learning through some of life’s challenges to be happy with what I can eat, enjoy, experience and not dwell on the things I miss out on. Not being able to eat popcorn (one of my favorite comfort foods), or tomatoes, or strawberries, or a whole list of other foods is not the worst thing that has happened to me. Me having to say no every day to things I want and enjoy has become like a meditation in gratitude.

I might not be able to have everything I want, but I am thankful for the things I can have, and I am starting to believe I take greater pleasure in the simplest things. Not being able to have everything I want is not a bad thing, it can build character and appreciation. I believe in self-care, but always saying yes to ourselves can lead to money problems, health problems, and other negative things. I’m getting good at looking for the positive in adversity and challenges, and I think it is serving me well. I’m happy, grateful and as healthy as can be expected and that is more important than handful after handful of buttery popcorn, or that scrumptious potato taco.

I’m Not Sold on Your Miracle Cure

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I don’t know about other cultures, but Americans spend billions every year on the latest trends, fads and health and wellness products. When someone came out with the idea that coloring was good for stress and mindfulness, adult coloring books were everywhere. When someone discovered that weighted blankets could help with anxiety, weighted blankets were everywhere. There are also health and fitness trends that have to do with diet and exercise. Every six months it seems there is a new diet that comes out like Paleo or Whole30, and there is Crossfit, a variety of new types of yoga, and meditation, the list goes on and on.

I benefit from many products that fit into these categories. I have a weighted blanket that I love, and I use happiness journals and will start using a productivity journal later this week, and I used to do yoga (before my back issues), and years ago I tried meditation but couldn’t stop laughing.

I’m not knocking the benefit that many of these things bring to the lives of the people who buy them, practice them, etc. What irritates me about all these diets, trends, fads, programs, etc. is how people act when they are using them or on them. Almost everyone has heard jokes about ex-smokers and how after smoking for twenty years, or so they go to the opposite extreme and start preaching against smoking. The same can be, and often is, said about born-again Christians – once they convert to Christianity, all they can talk about is converting to Christianity.

I see the same behavior with the latest diet, exercise program or things like mindfulness. The people that “discover” them (even though so many of the things are “borrowed” from thousands of years of tradition in other cultures) think that everyone should do them, everyone will find enrichment, everyone will lose weight, everyone will be happier, healthier, etc.

It isn’t that I don’t believe many of these things are great, I do, but I don’t believe that I need to try every new diet, practice every kind of exercise, buy every new coloring book, or Tibetian singing bowl, etc. When do I get to say, “You know what? I’m doing pretty well. I can keep doing what I am doing and get off this treadmill of the greatest latest new thing.”

It is not easy to live with schizophrenia. It is not easy to live with any chronic illness whether it is mental or physical. So much stuff comes along with a chronic illness; one of the big things is side effects from medications. My medications give me high cholesterol, high blood sugar, high blood pressure, and a host of other things. Those are just the things I have to deal with because I take medication not the things I have to deal with for why I need medication in the first place.

Can I change my diet? Yes, I have, drastically, and that only helps so much. Can I exercise more? Yes, I can when my back isn’t too painful to do it. Can I meditate, do mindfulness exercises, practice yoga, do Crossfit, eat only protein, and give up sugar? No. The truth is I can’t do all of those things. I am in too much pain to practice yoga, I would never dare risk a back injury by doing Crossfit, but I guess I could give up sugar, but I don’t want to (not yet, anyway, I might have to).

By being a preacher of what has “changed” your life and made you a “believer” you might be forgetting that not everyone has the same challenges you do. Not everyone can change the exercise they do, and maybe they have already been a vegetarian most of their life. It is also possible that people will not see the same results as the next person doing the same thing.

Also, I want to say, “Is it enough already?” Do I have to give my life over to something and become a complete convert who also preaches to say I am happy with my health and wellness? I am never going to be 100%, and I can live with that. I ’m never going to be 100%, and it is not because I’m not trying this thing or that thing. I am never going to be 100% because I have a chronic illness, and no amount of meditating is going to cure me. I know that is hard for many people to believe. I know that many people think they have found the path, the one true source, the answer to whatever it is that ails people, but they haven’t. If I can live with the fact that I have schizophrenia, and that I will most likely always have schizophrenia (there is always hope that science will find a cure) then why can’t everyone else?

 

 

 

 

 

Love, Marriage and Schizophrenia? You Bet!

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This post is to all the people with schizophrenia (in all its forms – paranoid, schizoaffective) who have asked me about love.

There is nothing wrong with being single. Being single can and is a positive choice for a lot of people, but there are many people with schizophrenia who have asked me and confided in me about their hope to partner up, get married, and share their life with another person.

When a society constantly shows people like us as defeated, broken, or in the worst case scenario as monsters, it is hard not to internalize negative messages about yourself. I have heard people of color talk about their own internalized racism. Why would people with schizophrenia, the most stigmatized of the mental illnesses, be any different than people of color when it comes to internalizing the messages we see, hear, and experience every day? We aren’t different; we do the same thing.

I’m here to tell you that hopes and dreams do come true. Schizophrenia doesn’t have to equal loneliness.  Having a severe mental illness doesn’t mean that other people get all the good stuff and there is nothing left for us. Schizophrenia doesn’t mean we are the messages society tells about us. We all know better. We are more. We are talented. We are lovers. We are fighters. We have wisdom. We have humor.

After it all, we are human, and we are worthy of love, and I believe if we want love we have the same chance as anyone else of finding it. I don’t believe for us it is like finding a needle in a haystack, I believe love is out there weaving its magic tail, and we need to find the strings of it and hold on, and from those strings begin to tie together a life. Possibly the life we have always dreamed of, or even better.

I know how hard it is to believe that your soul mate or the love of your life will come along. For me, the love of my life grew out of a long relationship. When I first met JC, he was the type that was a neatnik, and I was a slob. I had a dozen dirty coffee cups in my car, and while I was at work, he would clean out the car, wash all the cups, and leave them in the dish dryer in the kitchen. He put things away, and I tossed them on a chair, the floor, or the bed. I thought we would never make it. But as soon as I got sick, we knew that bigger things than how neat or sloppy we each were at our doorstep.

An episode of psychosis is a wake-up call about what is important and what is superficial. We quickly got past the superficial and started focusing on the big stuff. And the big stuff can ironically be small stuff with big importance, like the little things we do to show our love like making each other coffee, a back or foot rub, and always being the one in the other’s corner, cheering.

I feel like I have a gift for you. It is possible that you already know about this gift, or have seen it. If you haven’t, please do yourself the favor of watching it. It is a romantic story with a character who has schizophrenia. In my mind, it is all of our stories. It is the story I want the world to see. It is a story I can accept. It is a story I can relate to and one that I would tell people to watch if they want to know more about schizophrenia (there are others, but this one, this one…yes, this one). It is free on Roku, and it stars a young Johnny Depp, the name of the film is Benny and Joon.

If Hollywood (one of the worst offenders of stereotypes) can give us a movie about us that makes my heart sing, there is hope. Of course, we know there is always hope for all things, especially love.